Emily

Emily in her TEAM EMILY shirt for the Diabetes Walk

Friday, September 11, 2009

One therapist after the other...

One thing that has been such a pain with Emily having DS is the therapy! It might not be so bad if we could actually keep one for any length of time. She's getting closer to 3 everyday, which will be when she loses services from the program that provides therapy for her. She still cannot walk, and this is frustrating because I don't know whether I am going to be comforatable sending her to school without being able to walk. I'm hoping that she is walking by March 12, but I always have to look at all possibilities. Anyway, here we are, 6 months until her 3rd birthday, and we have no Physical therapist again, and I just got a call two days ago about us finally getting a new Speech therapist. Here's the therapy story that we have been through...

First of all, we started out with a Special Instructor(SI) and we needed a Physical Therapist (PT). Emily, at this point in time, had not been diagnosed with Diabetes yet, so she was VERY behind. Well, the Special Instructor that we had was constantly telling me that I needed to tie Emily's legs up so she wouldn't spread them out like a frog. OMG! And, that I needed to do exercises with her to help get her stronger. Well, I never did tie her up, and, of course, because of the Diabetes, as we know now, she never did get any stronger. I think that the therapist just got fed up with the fact that I wouldn't do what she wanted me to and was tired of messing with a baby that wasn't making any progess, so she made up some stupid excuse that I won't even grace my blog with to quit coming. Meanwhile, we found a PT. She came once, did her own evaluation of Emily, and I never heard from her again. Yes, she was supposed to be coming or contacting me or doing something. She wouldn't return my calls or anything. Eventually, I got sick of it and requested a new therapist. So, once again, we have no therapists. Emily was getting pretty close to being one at this time. Finally, we got a new SI. She turned out to be wonderful. She stayed with us for about a year before her health started failing her and she had to retire. Emily learned a lot from her, and I am still in contact with her to update her when Emily does special stuff. She was replaced by another wonderful therapist. So, SI therapists are still intact as of today. Meanwhile, again, we got a new PT. He was pretty good. Of course, Emily was still not strong and couldn't sit up. Shortly after we got this new therapist, however, Emily was diagnosed with Diabetes. This changed everything. She got stronger and actually started responding to the treatment that the PT was giving her. But, of course, problems arose. This PT was only an Assistant PT, which meant that he had to have someone that was over him to come about once a month and check up on things. Well, his supervisor got another job, and he was left without one. One could not be found...We lost him. The only therapist that was available was another assistant, and his supervisor was none other than the one that had come once and then blown us off at first. So, I was like, well I will give her another chance. So, I waited, and waited, and waited for about a week. Then, I called the service coordinator and told her that I wanted nothing else ever to do with that therapist again. We decided that it would probably be easier to find a therapist at a clinic instead of having them come to the house. Meanwhile, we have a Speech Therapist (ST) now. She is only able to come once a month. This doesn't work very well because Emily needed more, and she just couldn't do it. So, we found a PT at a clinic. There was also a ST at the clinic that could take Emily once a week as well. So, we thought we finally had it whipped. Note that Emily is over 2 years old by this time. Well, we start with these new therapists. It becomes obvious after a while that they were out quite a bit for one reason or another. It got to the point that Emily was missing therapy more than she was getting it. Then, the clinic was going to move into another building. I was told by the therapists that they would be closed for a few weeks to move...understandable, but still leaving Emily without any therapy. So, I didn't go to therapy the next week. However, my SI, who works out of the same clinic, came to the house. She told me that they actually had not been able to move that week. A week that was completely wasted because the therapists at the clinic had not bothered to call me and let me know this so we could come to therapy. Getting closer to 3 everyday...So, the time came to finally actually move. They were to be closed for 2 weeks...again. Emily had already gotten to the point that she didn't like them because she didn't see them enough. So, I had already put in another call to the coordinator asking for yet another SI and PT. It has been 3 weeks, and the clinic is still not open for therapy. The SI is probably going to come next week anyway, bless her heart, because she knows her clients need their therapy. As I said, we just got a call a couple of days ago letting us know that a ST should be calling us soon to set up a time to meet. However, the coordinator has had no luck finding a new PT yet. Once again, getting closer to 3 everyday...

Emily has been doing pretty well on her own. Within the month that we have not been having therapy at all, she has learned to pull up and say a few short words. I would just love to actually get a good, reliable therapist for once this time that could maybe give her the therapy she needs to get going a little faster and be walking by the time she is 3 and maybe even saying some more words as well. Frustrating...Hoping for better therapists!

2 comments:

When we first sent Kayla to preschool, she was barely walking. She started walking in December and went to school in February. It was a small special needs class, but she still looked like a baby in there! But she did fine and really thrived. Transition is such a scary time. Big hugs!

Thanks...I don't know anybody that has been through this transition time before. I just worry about how she is going to do because, right now, I am trying to transition her into a class at church with other kids that are around her age, and she looks like a baby in there. It's scary to me to think about sending her to school like that.

This is a blog about my sweet little Emily. At four months she was diagnosed with Downs Syndrome, and seven months later, we almost lost her to Type 1 Diabetes. I am so thankful for every day that I have her here with me. This blog will contain some of the joys and hardships that we face on a daily basis.